Compassion Fatigue: To Stop Caregiving Stress, Stop Caregiving
Compassion Fatigue: To Stop Caregiving Stress, Stop Caregiving
My mom didn't know she had compassion fatigue, since nobody named for her this extreme caregiving stress back when she was looking after her mother, who was in her 90s and had Alzheimer's disease. By the end, Mom was dutifully visiting the nursing home day after day for hours, where she'd not only quietly tend my grandmother but also became such a familiar face that she also felt she had to stop and greet half the other residents, visit Gram's barely-verbal roommate, bring treats to the nursing staff, and so on.
It was compassionate. But it was also taxing. And it added up to compassion fatigue. Compassion fatigue is a recognized stress disorder that often affects people in healthcare. But family caregivers are just as vulnerable. "Grieving by inches" is how compassion fatigue expert Sherri Showalter, a social worker in Tarpon Springs, Florida, describes it.
My mom didn't stop making the daily visits until her own doctor ordered her not to. As her own health began to suffer, he suggested she cut back the nursing home visits to every other day. She'd known in her heart this was necessary, but it wasn't until she had official "permission" that she felt okay about putting herself first.
Yet this is exactly the solution to compassion fatigue: stop caregiving – not forever, just for a day. Preferably a whole day.
Turning off your caregiver brain temporarily turns off caregiver stress. (You don't have to turn off your heart; obviously you still care. But this is about self preservation, and without the calm and energy that come from self nurturing, you simply can't nurture anybody else very well or very long.)
To find a day-long break from compassion fatigue, Showalter and others suggest:
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First, realize what's happening to you. Stress sneaks up. We might not feel miserable, but we start to add pounds, sneak extra cigarettes, grouse at the spouse. Caregiving stress strikes not just because the tasks rob our free time and our sleep. It infects our emotions. "Sometimes you can feel like you want to go out and bite the tires on the car because it's so frustrating," Showalter says. "There's a lot of grief, on top of guilt because we feel we shouldn't be grieving for someone who's still living. Self care is not optional."
Make the commitment, and recognize excuses as no excuse. It took my mom a physician's stamp of approval to give herself a break. Ask yourself what's stopping you from giving yourself permission to take a break: Guilt? Money? The time involved in setting up replacement care? Those are all legitimate issues, but ultimately they're self-imposed roadblocks because there's a way around each of them.
Look close to home. Can a family member (sibling, partner, aunt, uncle) step in for a day? Even a competent teenager may be able to "grandparent-sit," and both generations may especially enjoy the change of pace. Ideally, set up a once-a-week system.
Consider a trade. Know another family caregiver with whom you can pool time? It doesn't have to be another person involved in eldercare. Caregiving stress and compassion fatigue affect those responsible for young children and disabled people, too.
Look into community services. Contact your local area agency on aging to learn about resources in your community such as adult day programs (which range from craft lessons to dementia care) and other respite programs (which can include drop-in and day-long programs, even overnight care). Many services are low-cost or free.
Hire an elder companion. Local agencies can also point you to home health companies that offer this wonderful service: Professionals who will sit and play cards or talk to your loved one, take him or her to lunch or doctor appointments, and otherwise fill the role of attentive, trusted friend for a few hours a week.
Start small. If you can't go for a day, go for half a day. Go to lunch and a movie. Just do it, and do it regularly.
Make it a genuine escape. Ideally, don't use this time to run a million other errands or to attend a support group where you continue to talk and think about caregiving. Instead, get back in touch with your real self: Eat your favorite foods, do something you truly enjoy, whether alone or with favorite people.
Learn to trust. No, someone else might not prepare the food or anticipate your loved one's needs exactly the way you do. Nobody can replace you. But many people can ably substitute for you on an as-needed basis.
Make your escape complete. Leave a cell number for emergencies, but resist calling in yourself to check on the person. Be selfish in a good way...as in, focused on yourself.
Compassion fatigue is brutal. The goal is to forget caregiving stress awhile in order to recharge. You deserve it. But moreover, so does the person you look after. Think of the time you spend away as a way to improve the time you spend together.
It is very important for me (and others) to remember that we all have limits and boundaries and that honoring them is very important. This is a major part of my life and I appreciate your advice. Courtney_182 www.shiftshappen-site.com
Just to let you know....I went on vacation for 4 days. It was wonderful. I needed it immensely but when I got back, I got another "bomb" dropped on me..my unwed daughter who is 27 is pregnant...(what doesn't kill us makes us stronger right?). She is also working as a waitress and the boyfriend of one month says he will help (we can only hope) but now I can add the possibility of babysitting my new grandchild to my list of responsibilities (I don't need any more responsibilities) but I already told mom that this may change some things and I know that I will want to be there for my new grandbaby and my daughter. And she is an adult ....know of any really good sleep aids cause I'm tired of not sleeping!!!! And it's not getting better!!! But after my rest, I really do feel better able to cope...(when can I plan my next vacation) And I will really try to keep my sense of humor and as my mom says...try to think of that little bundle of joy coming into our lives...My mom is such a mom...Her response was that my daughter will probably make a real good mother. Keep sedative suggestions coming..ok???
This is a helpful article, but please remember that not all family caregivers are children caring for parents, some of us are spouses caring for our husband or wife.
Ohhhh how i relate to this. My 96 year old mom still lives at home with 24 hour care on rotating shifts (medicaid). I am the only child living nearby. Even with her 24 hr. care, the stress on me, the "worry time", the errand running, shopping, dr. appts with her, plus working full time (in a job that is also in jeopardy) are finally taking their toll on me after 10 years (when my dad only died 2 years ago). Suddenly, this past August, I got a terrible cough, followed by a kidney stone, followed by some sort of stomach virus and exaccerbated reflux symptoms. I was a mess physically and mentally. Now I was also worried about my own health,not only my mom's. I am certain all of these ailments are stress related. One by one they are being followed up and taken care of, but the stress continues. I can sympathize with everyone here. The guilt, the stress: it's universal....it's not Jewish, it's not Italian, etc...it just IS. We must find coping skills and a support system to carry us through. This too shall pass.
PT Cruzr, you bring up a great question on how do we let our parents know we need the break, which I'm going to add to our Family Advisor Carol O'Dell's long queue of family conflict questions. Thanks for sharing your story -- I hope you know it's good to vent! Plus you bring up a lot of points that will help others in similar shoes.
I had a near mental type breakdown earlier this month when my sister told me that she would be gone for the next 8 weekends and would during that time also be taking 2 weeks vacation. My mom lives with my sister and my sister works full time. I take mom on all of her appointments, take her one night a week for dinner and cover for my sister when she is gone on vacation (which she tries to do once per month) but giving up 8 weekends in a row without my husband almost put me over the edge. I work every other weekend so my weekends are my getaway too. I have been caring for my parents now for 8 years. My father died 3 years ago and my mom moved in with my sister 2 years ago. I have taken care of all of their appointments during this time and while mom never lived with me, many weeks, I spend at least 3 days with her and one evening. And when Dad was alive he had to go to the hospital 2-3 times a week. (And I was the cab) So, while my sister was continuing to get away, I wasn't and it got to me. After I nearly fell apart, we enlisted the help of my daughter and my niece for the weekends (I will still take care of mom for the week when my sister is gone) but you cannot believe what a difference this made. I still see mom at least 3 days a week but I needed to take a day to NOT WORRY about her. I will be going away next week for 3 days...the first vacation all year and I am looking so forward to it. I also found that one weekend, I had my daughter take care of mom and I tried desperately to keep from phoning mom and that getaway helped immensely. We all need to just NOT WORRY for a time. I cannot imagine trying to care for a parent without having someone to share it with. One of our biggest problems with mom is the guilt that she puts on us when we want to get away. Immediately when my sister says that she is going to be away, Mom says she will come to stay with me. She makes my sister feel guilty for being gone all the time and when I told her I was going away for 3 days, maybe her "heart is failing". How do you make the parent know that you need to get away so you can be a better person for them? Oh, and by the way, during these mini-vacations for my sister, we hired a home care provider for one night and mom said that she was weird, my daughter was unreliable,etc., etc. She is only happy with her daughters and we can't be there all the time. Sorry for being so long winded...just need to vent. I believe that communication is very important in these situations and we all need to remember that we still love our parents and when they are gone, you know how much you love them and you can't get them back.
Great article Paula, Caregiver stress is a serious issue and a difficult one to broach. But it is important for each of us to realize that we only have so much to give. That we need to take care of ourselves. In the long run, taking a break and breaking the stress is better for the care recipient too. I liked your suggestion on looking locally for a friend or family member and you suggestion of hiring a care provider. I saw, maybe you can combine the two. Many adult children live far from their aging parents leaving just one sibling to care for mom or dad. Maybe ask those living far away to pitch in for hired care that you can trust. Just a thought. For more information on eldercare, check out our blog at http://www.rightathome.net/seniorhomecare.